How long have you had your VNS, Valerie? I am sure I knew at one time, but you know how our memories are. My hoarseness is kind of bad sometimes, too. Do you have problems with that? Any other words of wisdom at this point?
I got my first VNS in May of 2007. I got my second VNS in Dec 2013.
With the first one my meds had to be messed around a good bit with to figure out what worked best with what current and how often it went off. It took a while to do this, probably over a year. I was put on less meds or lower dosages instead of having things increased. When I got the second one my meds weren't adjusted at all. All the time that I've had the VNS's, first and second, the current and timing have been adjusted, usually increased, depending on how many and how bad my seizures were. At my last visit about 2 months ago the current was increased again because I was having a lot of seizures.
I've been having a lot of seizures I know are caused by things that are going on in my life right now. My grandma passed away and I know that played a huge part in it. Depending on how many seizures I'll still be having I don't know if my neuro will want to change anything because he said he really doesn't want to increase the current any higher than it's at - 3.00. (I think that's what it is, memory's not that great as you can relate to)
I think I may have mentioned these in another post but he only problems that I know I have from the VNS are that I can't keep my breath going as long as I used to. The only way I really know how to describe it is when I'm singing a song I can't make it through a whole verse without loosing my breath. I read that this is a side effect from it.
Another problem, and I'm not sure if it's from the VNS or not but I never did it before I had it, is that I have MONSTER burps. I sound like a lion roaring. My family thinks I'm joking when I do it but I couldn't do it if I tried.
I don't have hoarseness but I think I read that it is a side effect of the VNS. I can't remember if I read the side effects on the VNS website or if I read them in the pamphlet that came with it. But there are a good bit of side effects that it comes with.
I have a printed out list of all my info on it that. It's saved on the computer too. I keep one the fridge so someone can grab in a hurry and one by the computer so I have all my info if I need it when I'm on here. I keep a list in my purse and all of my family has one too. It's all things that you are usually asked when you see a dr or if I end up in the emergency room.
It has on it:
- My name, birthdate, address and phone number
- Emergency contact with their phone number
- That I cannot have an MRI
- That I wear contacts/glasses
- Any other illness that I have/had other than epilepsy
- My PCP and his phone number and my neuro and his phone number
- Meds and anything else that I'm allergic to
- All of the meds that I take, including vitamins, what the dosages are and when I take them. I have written down the name brand and the generic version that I am on
- Any surgeries that I've had, the date I had them, the dr who did them with their phone number
- My pharmacy with their address and phone number